Saturday, April 12, 2008

Birthday parties...

A great analogy of how life tends to be for me came to me this morning when I was coaching my 7 year old grandson how to RSVP to a birthday party invitation. My older son was standing in line, waiting for my attention...

I really had an 'ahh' moment (as opposed to an 'aha' moment)...

I carefully read out the phone number for my grandson to dial. Which he did in just the slow and deliberate way you would expect any 7-year-old to do - and, interestingly, at about the same speed as I do... And because my son was watching and waiting, I really 'felt' the length of those extra seconds.

Then I coached him through the call... I reminded him to say "Hi"... and to say who he was... And to explain why he was calling. To say 'thank you for inviting me' and 'yes I will be coming' - and then to ask his questions about timing and directions. It was quite a long and complicated call. At the end he was beaming and so proud that he had every bit of the information he set out to get and he'd handled the call 'just like a grown up'. He was so excited he punched his fist into the air!

For me it was a very timely reminder of the legitimacy of why I am always rushing and why my life often seems like trying to run through thick treacle... It actually can be! Every single little thing that I do requires conscious thought and effort - even something so mundane and obvious as swallowing. If I get distracted, I choke. Every single mouthful of food or drink needs a moment of conscious thought. Can I sip a drink while I'm driving? Only if I am very, very careful...

A chain of events - like saying Hi when you make a phone call, followed by introducing yourself, followed by setting the scene to orient your listener, followed by asking your question - all the time making sure that your listener is still 'with' you. Let alone smiling so that my voice sounds happy... None of that is automatic for me. Still. Over twenty years later - and despite that I 'look' absolutely fine, it's still an effort. I often forget a step, even though I try hard to remind myself. Then I'm very self-conscious of the fact that I sound 'a little off'... It's very easy for me to 'forget' to feel confident...

Everything takes longer and means extra effort. It's not quite the same as it is for 'you'. Which is OK... But as survivors of a brain injury we have to make super-human efforts to 'be normal' and when we try and explain ourselves and we are not heard, we feel minimized. Invisible like our disabilities. Ignored. We would give our right arms (well maybe not!) if things could be easy for us again - as in 'just the same for me' when it really was just the same... (And I say 'we' after speaking to many other survivors about this>) When someone - anyone - tries to explain their world to you, please hear them. To reply with 'it's the same for me' - even if it really is the same, is to dismiss them. They have said it because they want to try to explain their life to you. They want you to understand; they care about what you think; your understanding is valuable to them.

I - and thousands like me - try so hard to keep up with today's really fast pace. It's a constant, huge (overused word, yes, but it fits here...) problem that will be with us for the rest of our lives. Seeing and being part of this special 'RSVP phone call' reminded me to be kind to myself and to give myself a hug - especially when I feel like giving up altogether. That I keep going despite some of the difficulties is really quite an achievement. Underneath the 'normal' veneer - that I work so hard to put up - occasionally is a frustrated and sad woman. With a little more understanding - from both you and from myself - it could be a woman punching the air and cheering yes! Even after something mundane and 'everyday'.

Let's celebrate the fact that we are here at all. Every day...

Yes!

PS Thank you Ann for teaching me how to make a link!

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